CysticFibrosis.com - Adultshttp://forums.cysticfibrosis.com/
enFri, 22 Feb 2019 16:21:31 GMTvBulletin60http://forums.cysticfibrosis.com/images/misc/rss.pngCysticFibrosis.com - Adultshttp://forums.cysticfibrosis.com/
https://hbmbzone.com/keto-viante-reviews/http://forums.cysticfibrosis.com/showthread.php/183607-https-hbmbzone-com-keto-viante-reviews?goto=newpost
Fri, 22 Feb 2019 07:03:21 GMTKeto Viante
Keto Viante Australia :-The states of being in Keto Viante Australia square measure starting late referenced helping your body...Keto Viante
Keto Viante Australia :-The states of being in Keto Viante Australia square measure starting late referenced helping your body accomplish a state of ketonemia while not changing your eating plan a silly dimension of. In all likelihood, Keto Viante Australia works in the bicycle with exercise. the inspiration driving Keto Viante Australia is to enable your body to accomplish ketonemia, any way you continue having do rehearse so concerning fat to be closed down quickly.

https://hbmbzone.com/keto-viante-reviews/
]]>Adultsweruyoiuhttp://forums.cysticfibrosis.com/showthread.php/183607-https-hbmbzone-com-keto-viante-reviewsNasal administration of antibiotics. With most Cfers we have pseudomonas in our sinushttp://forums.cysticfibrosis.com/showthread.php/183602-Nasal-administration-of-antibiotics-With-most-Cfers-we-have-pseudomonas-in-our-sinus?goto=newpost
Thu, 21 Feb 2019 02:19:27 GMTDoes anyone do nasal administration of antibiotics? If so would you mind sharing what antibiotic or antibiotics and much, mg etc. as well how it is...Does anyone do nasal administration of antibiotics? If so would you mind sharing what antibiotic or antibiotics and much, mg etc. as well how it is administered in how much saline or distilled water.
Do you mix your solution or does a pharmacy.
]]>Adultsscanboydhttp://forums.cysticfibrosis.com/showthread.php/183602-Nasal-administration-of-antibiotics-With-most-Cfers-we-have-pseudomonas-in-our-sinusCayston Equipment?http://forums.cysticfibrosis.com/showthread.php/183593-Cayston-Equipment?goto=newpost
Fri, 15 Feb 2019 18:49:10 GMTHi guys I'm just wondering how all of you clean your Cayston equipment (the grey && black cord, purple handset, etc) because I notice that my grey cord that connects to the nebulizer gets really sticky and gross with buildup from the medicine. Any suggestions as to what I can use to clean it with? Okay thanks all and have a wonderful Friday! :)
]]>AdultsMirrorMirrorhttp://forums.cysticfibrosis.com/showthread.php/183593-Cayston-EquipmentIncreasing Lung Functionhttp://forums.cysticfibrosis.com/showthread.php/183589-Increasing-Lung-Function?goto=newpost
Thu, 14 Feb 2019 02:46:02 GMTAny tips on increasing lung function? I've had a 20% decline in the past month due to pneumonia and am trying to get mine back up, but it's not going very well.

Thanks.
]]>Adultssunshine39656http://forums.cysticfibrosis.com/showthread.php/183589-Increasing-Lung-FunctionHypersal/Hypertonic Saline not covered by insurancehttp://forums.cysticfibrosis.com/showthread.php/183582-Hypersal-Hypertonic-Saline-not-covered-by-insurance?goto=newpost
Mon, 11 Feb 2019 15:10:07 GMTDS' doctor prescribed 7% sodium chloride for inhalation last fall with his albuterol. Previously he'd been on albuterol/atrovent nebs. They eliminated the atrovent. Seems like insurance (BCBS) doesn't cover hypertonic saline -- it's a noncovered, nonformulary prescription and therefore it doesn't go toward our deductible and we pay at least $33 per month. I seriously doubt they'll make an exception and add it to the formulary list since they've never done so in the past. Heck, we had to switch enzymes over 8 years ago and they still only cover creon or zenpep, non of the others.

I should add that I suspect we're not eligible for Healthwell.

Suggestions? are there any other copay assistance programs?
]]>AdultsRatatoskhttp://forums.cysticfibrosis.com/showthread.php/183582-Hypersal-Hypertonic-Saline-not-covered-by-insurancePic line vs. Port from msteinhttp://forums.cysticfibrosis.com/showthread.php/183579-Pic-line-vs-Port-from-mstein?goto=newpost
Sat, 09 Feb 2019 18:15:32 GMTI am sick every month and I use a pic line What are the advantages of using a port over a pic line And what is a port and where and how is it...I am sick every month and I use a pic line What are the advantages of using a port over a pic line And what is a port and where and how is it inserted?
]]>Adultsmsteinhttp://forums.cysticfibrosis.com/showthread.php/183579-Pic-line-vs-Port-from-msteinUK: Campaigners urge NHS to ignore patents on VERTEX CF drughttp://forums.cysticfibrosis.com/showthread.php/183571-UK-Campaigners-urge-NHS-to-ignore-patents-on-VERTEX-CF-drug?goto=newpost
Tue, 05 Feb 2019 23:36:51 GMT*The fight to get Vertex’s cystic fibrosis drug Orkambi available on England’s NHS continues, after pressure groups called on the government to...The fight to get Vertex’s cystic fibrosis drug Orkambi available on England’s NHS continues, after pressure groups called on the government to implement a little-known law allowing to set aside patents and provide drugs for the benefit of society at a much cheaper price.
A patient-led pressure group, Just Treatment, has joined with campaigners who want Vertex’s cystic fibrosis drug Orkambi to be funded by the NHS, and last night lobbied the government to implement the so-called “Crown use” law.
Under provisions in the 1977 Patents Act, the government could allow another manufacturer to make Orkambi and pay Vertex a royalty that would be much lower than the list price of around £104,000 per patient per year.

https://pharmaphorum.com/news/campai...84d2-431716241
]]>AdultsImogenehttp://forums.cysticfibrosis.com/showthread.php/183571-UK-Campaigners-urge-NHS-to-ignore-patents-on-VERTEX-CF-drugCapsule endoscopyhttp://forums.cysticfibrosis.com/showthread.php/183570-Capsule-endoscopy?goto=newpost
Tue, 05 Feb 2019 15:52:24 GMTHas anyone ever had a capsule endoscopy done? I have one scheduled for Friday and just wanted to know your experience with it. Thanks.Has anyone ever had a capsule endoscopy done? I have one scheduled for Friday and just wanted to know your experience with it. Thanks.
]]>Adultsrubyroseleehttp://forums.cysticfibrosis.com/showthread.php/183570-Capsule-endoscopyBlockchain Caucus USAhttp://forums.cysticfibrosis.com/showthread.php/183568-Blockchain-Caucus-USA?goto=newpost
Mon, 04 Feb 2019 14:12:13 GMTI went to the Blockchain Conference at the Beth Israel Deaconess Hospital in Boston last Thursday, January 31.
It was an elite group of scientists...I went to the Blockchain Conference at the Beth Israel Deaconess Hospital in Boston last Thursday, January 31.
It was an elite group of scientists and I had the opportunity to present our survey results for:
Discovery, Research, and Profit.

Your voices were HEARD!

I will continue to report on the progress made.

I had a positive response from Roche in Switzerland and George Washington University.

I will begin to give you links to the people involved.

Raja asked me to represent our patient community in Washington with the FDA and lawmakers on May 14th.

I will continue to report on all the good news!
Salt and Light,
Imogene

This issue is close to 60 pages (a record for us!) and it’s almost here! If you or anyone you know wants to receive their own issue in print or PDF, there’s still time!

If you subscribe before tomorrow, January 26, you will be added to the mailing list in time to receive it.

As always, you can subscribe at no cost
]]>Adultsjriccihttp://forums.cysticfibrosis.com/showthread.php/183551-CF-Roundtable-NewsletterPort Questions for Worker Outershttp://forums.cysticfibrosis.com/showthread.php/183546-Port-Questions-for-Worker-Outers?goto=newpost
Thu, 24 Jan 2019 15:41:04 GMTHi all,

I've had a port for about five years, but have only had to use it once for somewhat long-term IVs. I'm about to start very long-term IV treatment for M. Abscessus, meaning the port will basically be accessed all the time for who knows how long. So, I have some questions for folks who have ports and also like to exercise.

If you do cardio and sweat a lot while the port is accessed, what do you do? Do you change the dressing afterward? Do you keep it as is and hope everything dries under the dressing? Or maybe you just de-access every time you work out?

I try to do cardio every day, so de-accessing every time is not an option. When I was on IVs previously, I think I changed the dressing after every workout, though that was kind of a pain. Sometimes there's no way to get the dressing off the needle without pulling out the needle too, and regardless, it's kind of time-consuming.